lingua
New member
- Joined
- Jul 6, 2023
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hello, all. I hate to be back, but I have further concerns after having met with my neurologist a few times.
In full transparency, I had a different thread here that was locked, presumably due to inactivity. It can be found here: Awaiting EMG. Rapid onset of strange symptoms. Scared.
In the time since my last thread, I've been fortunate to meet with my neurologist who is a very seasoned, well-recommended doctor. His specialty is neurovascular medicine, but he's heard me out about my concerns specifically and I got both an EMG (left arm and leg) and an EEG. Both came back "clean" and he emphasized that he saw absolutely no abnormalities whatsoever on either test.
I asked if there was a need to test the bulbar region because my most prominent symptoms are all there and he said no. In his words, "Motor neurons are not localized. If it was likely to be ALS, we'd see some kind of sign on any EMG." Given the accounts of people who had bulbar-onset with clean limbal EMGs on this site, that was not exactly convincing to me, but he went on to say that in his opinion (as well as in the opinion of the man who performed the EMG and has been performing them for almost 30 years), "MND is not even currently on the table."
He prescribed me a new medication (the last one hasn't stopped my "tics"), ordered a three-day EEG because he's still not convinced I don't have something going wrong in my brain itself, and then asked me to see him again after 6 weeks.
Now, I'm currently going through fewer symptoms than I had in the last thread, but it just seems odd to me that after one EMG, one EEG, and a single clinical test, he'd rule out even the possibility of ALS outright. The left side of my tongue has grown thinner, my tongue points left when I stick it out of my mouth, and I think it's atrophying. But when I brought up my tongue, he didn't even look at it. He seems completely convinced that I have either a tic disorder or some kind of brain malfunction and I have no idea how I'm supposed to have so many potential ALS symptoms I've read about (including here) and just sort of hope that he's right without him even being willing to test for it.
As of today, my symptoms are as follows:
-constant tongue twitches with frequent really wild tongue movement including sticking out, running along my teeth, and taco'ing so hard it hurts on the left side
-occasional lateral jaw movement to the left that squeezes so tight it hurts terribly
-rhythmic head movement in a kind of circle that muscularly originates in the left side of my neck and sometimes gets locked backward and squeezes terribly as well
-speech that slurs when I'm not actively keeping it from doing so (only I've noticed so far, but that's not out of the realm of bulbar-onset possibility as far as I've read)
-weakened/occasionally breathy and uncoordinated voice
-gnarly fatigue
-odd bouts of shortness of breath (not when I'm out walking or lifting at the gym, but when I'm merely standing around or lying in bed)
-perceived weakness in all four limbs as well as episodes where I feel an electric buzzing in them that is so uncomfortable I just writhe in bed whenever it happens
-slight twitching/tremoring in hands at rest, but also when I'm trying to use them in fine motor control kinds of ways
Would you get a second opinion? Should I ask him why he is unwilling to perform an EMG in the bulbar region to be safe? Or am I overthinking this and I should just go along with it and if it turns out I have ALS and it's found out once the symptoms get really gnarly, oh well? He's a well-respected neuro among the other neurologists I've been able to ask about him, but it seems almost like my concerns aren't being taken seriously given the symptoms I have. I obviously do not want an ALS diagnosis, nor am I "chasing" one, but how is anyone supposed to live without that peace of mind? It's maddening.
Thank you once again for your time.
In full transparency, I had a different thread here that was locked, presumably due to inactivity. It can be found here: Awaiting EMG. Rapid onset of strange symptoms. Scared.
In the time since my last thread, I've been fortunate to meet with my neurologist who is a very seasoned, well-recommended doctor. His specialty is neurovascular medicine, but he's heard me out about my concerns specifically and I got both an EMG (left arm and leg) and an EEG. Both came back "clean" and he emphasized that he saw absolutely no abnormalities whatsoever on either test.
I asked if there was a need to test the bulbar region because my most prominent symptoms are all there and he said no. In his words, "Motor neurons are not localized. If it was likely to be ALS, we'd see some kind of sign on any EMG." Given the accounts of people who had bulbar-onset with clean limbal EMGs on this site, that was not exactly convincing to me, but he went on to say that in his opinion (as well as in the opinion of the man who performed the EMG and has been performing them for almost 30 years), "MND is not even currently on the table."
He prescribed me a new medication (the last one hasn't stopped my "tics"), ordered a three-day EEG because he's still not convinced I don't have something going wrong in my brain itself, and then asked me to see him again after 6 weeks.
Now, I'm currently going through fewer symptoms than I had in the last thread, but it just seems odd to me that after one EMG, one EEG, and a single clinical test, he'd rule out even the possibility of ALS outright. The left side of my tongue has grown thinner, my tongue points left when I stick it out of my mouth, and I think it's atrophying. But when I brought up my tongue, he didn't even look at it. He seems completely convinced that I have either a tic disorder or some kind of brain malfunction and I have no idea how I'm supposed to have so many potential ALS symptoms I've read about (including here) and just sort of hope that he's right without him even being willing to test for it.
As of today, my symptoms are as follows:
-constant tongue twitches with frequent really wild tongue movement including sticking out, running along my teeth, and taco'ing so hard it hurts on the left side
-occasional lateral jaw movement to the left that squeezes so tight it hurts terribly
-rhythmic head movement in a kind of circle that muscularly originates in the left side of my neck and sometimes gets locked backward and squeezes terribly as well
-speech that slurs when I'm not actively keeping it from doing so (only I've noticed so far, but that's not out of the realm of bulbar-onset possibility as far as I've read)
-weakened/occasionally breathy and uncoordinated voice
-gnarly fatigue
-odd bouts of shortness of breath (not when I'm out walking or lifting at the gym, but when I'm merely standing around or lying in bed)
-perceived weakness in all four limbs as well as episodes where I feel an electric buzzing in them that is so uncomfortable I just writhe in bed whenever it happens
-slight twitching/tremoring in hands at rest, but also when I'm trying to use them in fine motor control kinds of ways
Would you get a second opinion? Should I ask him why he is unwilling to perform an EMG in the bulbar region to be safe? Or am I overthinking this and I should just go along with it and if it turns out I have ALS and it's found out once the symptoms get really gnarly, oh well? He's a well-respected neuro among the other neurologists I've been able to ask about him, but it seems almost like my concerns aren't being taken seriously given the symptoms I have. I obviously do not want an ALS diagnosis, nor am I "chasing" one, but how is anyone supposed to live without that peace of mind? It's maddening.
Thank you once again for your time.
